SaRene Brooks RD, CD, CDCES: my diabetes journey
Every diabetes journey is unique to the traveler. However, anyone touched by diabetes shares some things in common. I want to share my journey with you and hope it will help you feel like you are not alone in your travels and that you can embrace the adventure.
The start of my journey
It all started when I was a small child. I remember my parents talking about diabetes and how my dad could not eat sugar anymore. I was a little confused and anxious about it all. I watched my dad take injections with a long needle. He would use urine strips to test his glucose, which really did not mean much to any of us nor did he know what to do to make changes or improvements. He was doing the best he could by limiting his sugar intake all the while eating things such as fruit and bread without considering the impact on blood sugar. I always thought that I would eventually get diabetes because anytime I did not feel well, my parents tested my sugar first with urine strips then later with apparatus called an Autolet, we called it a guillotine. You would place your finger at the base, push a button and a needle would swing down onto your finger. This would allow for blood glucose testing rather than urine tests.
Things have come a long way since then. Just the discovery of the impact of carbohydrates on blood sugar (rather than solely sugar as once thought) was amazing. Not to mention the small drop of blood required for today’s meters and the invention of continuous glucose monitors and insulin pumps.
Whew, I did not get diabetes.
Well, I never did get Type 1 diabetes but my journey did not stop there. I went on to marry a wonderful man named Scott. A few years into my marriage, Scott’s brother was diagnosed with type 1 while in his late 20’s. This was new to their family and quite surprising. Then a few years after that their 2-year-old son was diagnosed with type 1. This was not only shocking but heartbreaking. I watched this little boy’s parents learn the ins and outs of carb counting, mixing insulin, injections, and testing blood glucose. Scott and I decided we wanted to have an active role in their support system. We spent time with their family observing how they cared for him, we practiced giving him injections with his parent’s guidance and then finally became comfortable enough that we could care for him on our own. We were the respite team when his parents needed a night out and it gave them somewhere they could safely leave him. We grew pretty fond of this little boy and had an eye-opening experience as we saw how complex diabetes management is with a small child.
The adventure continues…
Fast-forward 13 years, our oldest son Tyler, who was 16 years old, starts feeling sick. We assume it is the flu and he stays home from school. The following morning, he sat at the table with me and Scott. He tells us that he knows something is wrong but he is not sure what it is. He describes his symptoms of extreme thirst, frequent urination, blurred vision, and weight loss. That is when we pieced it all together and knew immediately it was type 1 diabetes. In an instant, I was flooded with all sorts of emotions of the reality that our future held. Our son then said, “I think I am going to pass out” and he fell to the floor. That was the start of his journey with diabetes.
Diabetes was not new to me but I was not prepared to have a child with type 1. I remember feeling overwhelmed and scared. I even had a sort of “survivor’s remorse” in wishing it was me with diabetes. Thoughts such as ”I always thought I would get diabetes so it may as well be me”, or “I am an adult and he has his whole life ahead of him, it should be me”. However, there was this part of me that knew we could figure it out. Look at all the practice we had with our nephew, we had hands-on training. I do remember calling my sister-in-law about 6 months after my son’s diagnosis and telling her I was done and we were ready for diabetes to go away, and I truly meant it.
5 years later my youngest son Kody came to Scott and told him he had all the symptoms of diabetes. Fortunately, he had recognized them immediately. They tested his blood and sure enough his blood glucose levels were high. They both sat me down and told me the news. I was emotionally overwhelmed knowing what he had ahead of him. My husband made me leave the room to cry so I wouldn’t scare Kody.
A few weeks after this diagnosis, an amazing diabetes educator told us of a study that was taking place for those newly diagnosed with type 1 diabetes called Defend 2. Kody was able to participate with great success. He did not use insulin for 6 years but managed his diabetes with regular physical activity and proper nutrition. The good news here is that research is ongoing in an effort to find a cure for type 1 diabetes. But until that happens, let’s find the best way possible to manage it.
The middle child
Well, what about my middle child Jared? I have 3 boys and now my oldest and youngest had type 1. Currently, Jared fits the mold of the “personality traits of a middle child”; peacemaker, competitive, thrives in friendships, overshadowed. Looking back, I did not pay attention to how this might be impacting him. We did some testing to see if he had the antibody markers of type 1, which he did not. For some reason, I thought that was the end of worrying about him. Looking back now, I should have taken time to listen to how he felt about his brother’s diagnoses. I am sure he was confused at first, maybe sad or scared. I do know that he was the best at recognizing lows. He knew when his brothers were low before they did. He was like their own personal “alert” buddy. But my insight now tells me that it is important to address the needs and feelings of all family members, especially siblings when a type 1 diagnosis is made.
This is expensive!
Besides the emotional toll diabetes can have, it also brings a new level of financial responsibility. Insulin, countless diabetes supplies and doctor visits climb to the top of the budget. They are life support to someone with diabetes. I saw large medical bills consistently coming in. Fortunately, we had health insurance but paid dearly for it because Scott and I were both self-employed at the time. If you have insurance, be sure to fully understand the coverage. Make sure to ask questions such as what is covered and how it is covered. Know where you can go to purchase supplies. If you are having supplies shipped, find a reputable company that will have shipments delivered on time.
If you don’t have adequate coverage, you may find some ideas here: ADA – Health Insurance Information
I want to be a normal teenager
I heard this more than once. My boys just wanted to be like everyone else. They didn’t want to test their finger or take an injection at the lunchroom table. They wanted to eat fries and milkshakes with their friends, go to prom without wondering how to adjust for the nice dinner, refreshments, and late-night snacks that were sure to be part of the festivities. We decided to find ways to manage diabetes around a teenager’s lifestyle. It might mean some bending of rules such as “no insulin stacking” and it occasionally came at the expense of a short-term high blood glucose. But our boys did not change their life for diabetes. We figured out a way for diabetes to be a part of their life. They continued to do all the things they loved; sports, backpacking and eating pizza late at night with friends. Fortunately, CGMs and pumps eventually became part of their management and it made things more “normal” for them.
Know the signs of type 1 diabetes
If you are reading this, you may already know the signs of type 1 diabetes. You can do your part by making others aware. Type 1 going undetected can lead to serious life-threatening outcomes.
Learn more about the signs of type 1 diabetes at: Type 1 Diabetes Symptoms. Then help others around you learn to recognize these signs as well.
It takes a team
We had a wonderful support system. However, it didn’t happen automatically. We had to spend time teaching those around us what type 1 diabetes was and what it took to manage it. We gathered Tyler and Kody’s friends together to talk about diabetes. We even let them test their own blood sugar. My advice here is to involve as many people as possible; friends, teachers, coaches, extended family, youth leaders and others. Teach them what it means to be “low”, how to recognize signs and how to help your child. Explain what your child does to manage their diabetes and answer questions they will most definitely have. The more people you can get on your child’s team the better.
Diabetes Self-Management Education
Our diabetes educator literally saved us. She got us through a steep learning curve and gave us help and support as things changed. At the time I was not an educator, I was a mom trying to manage children with diabetes. I have since gone on to become a Registered Dietitian and a Certified Diabetes Care and Education Specialist in hopes that I can help others along their journey by providing support and education. But coming from both the mom and the educator, diabetes self-management education is critical in gaining skills and knowledge to manage diabetes throughout a lifetime. Also, utilize your professional diabetes team to help you stay up on the latest advancements in technology and learn how to use what you have to full potential and/or help your child to do the same.
I call this a journey because it is a progressive path filled with ups and downs, and many things to learn along the way. Gain as much knowledge as you can, do your best to make good management decisions and then find a place to let diabetes fit into your life.